Acalabrutnib and Hair Loss

[theclarksark]

Hello fellow CLLers. I started Acalabutnib 80 days ago after 4 years of W&W. My hair shedding started immediately after beginning therapy. I feel I have lost half of my hair at this point and the shedding continues. Other than that, I feel much better than before therapy primarily because my shortness of breath is improved and my nodes and thyroid have shrunk to near normal states. My arthritic aches and pains worsened initially but Turmeric in the form of Golden Paste 3 X day has eliminated the pains. My question is, has anyone had this degree of hair shedding from Acalabrutnib and, if so, does it stop at some point before one has no more hair to shed?

[AussieNeil Administrator]

Your hair loss on acalabrutinib is rather extreme, but a couple of members have reported it, even though it's not on the list of recognised side effects:-

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

Neil

[Fwanni in reply to AussieNeil]

Neil any experience/information on zanubrutnib? Prof Peter Hillmen, Leeds, wonderful researcher is very positive about this versus ibrutnib.

[AussieNeil Administrator in reply to Fwanni]

Zanubrutinib was recommended for CLL treatment in the US National Comprehensive Cancer Network (NCCN) about a year ago (late 2021). That use is off-label, as Zanubrutinib is currently only FDA approved for Mantle Cell Lymphoma, but CLL approval should occur around the end of this year or early 2023.

Per our community search WarriorPrincess4 healthunlocked.com/cllsuppo... mentioned good results from a clinical trial 4 years ago. There are sure to be quite a few more who are on zanubrutinib (HU search doesn't turn up matches in replies), so I suggest you write a separate post asking for anyone on Zanubrutinib to share their experiences.

Neil

[Zia2]

I lost half of my hair but from Ibrutinib likely. I believe it began then but I did switch to Acalabrutinib. My CLL specialist said it’s rare and not likely but if it’s rare it occurs right? Now that I’m on Zanubrutinib it’s grown back, full and thick again thankfully. Even those that said it was my age were incorrect. If you can look at my post do as many answered with the same problem.

[theclarksark in reply to Zia2]

Thank you for your insight. Did you switch to Zanubrutinib because of hair loss?

[Zia2 in reply to theclarksark]

No, migraines and muscle/joint pain.

[lankisterguy Volunteer]

Hi theclarksark,

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As AussieNeil says there have been a few members that reported hair loss, but it does seem the exception for Acalabrutinb. It has been reported for other treatments like Ibrutinib more often, but Acalabrutinib and Ibrutinib are similar compounds. Venetoclax and FCR are entirely different, but stress of treatment has also been mentioned as a possible cause of the hair loss.

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Please look for the box on this page labeled: Related Posts

*Hair Loss with Venclexta/Venetoclax? healthunlocked.com/cllsuppo...

*Ibrutinib and hair loss healthunlocked.com/cllsuppo...

*Hair loss with Venetoclax. healthunlocked.com/cllsuppo...

*Hair loss with FCR treatment healthunlocked.com/cllsuppo...

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Len

[Zia2 in reply to lankisterguy]

My hairdresser did say perhaps it was my body’s response to the shock of treatment but we both agree it was caused by it.

[morepork]

Hi, I can say my lovely thick hair underwent a dramatic change after a month or so on Ibrutinib, and is now baby soft limp and sheds all over the place like some ancient longhaired dog. Not easy to vacuum up either. I put some outside for the sparrows who were nest building and they seemed keen on using it !! 😊

[theclarksark in reply to morepork]

Yes! My hair is limp in addition to shedding constantly . Im not seeing any new growth either. If this goes on much longer, I will consider it an unacceptalble side effect. Permanent baldness would be a real life changer.

[lotn9]

Hello, I too have lost my hair on Acalabrutinib, they tried me on Venetaclax but that was a nightmare, everything went wrong for me, from an infection in my picc line, to having to stay one month in the hospital with a lot of blood work. So when they switched me, my hair loss began, it has gone limp and my vacuum works overtime to get rid of the amount of hair on the carpets. I even called Astra Zeneca who thanked me for alerting them as they did not know that this was or could be a side-effect as it was not on their list, so maybe now it will be. I feel that this is a small price to pay as the side effects apart from a headache and some bruising this "wonder drug" has helped me a lot. I was in remission for five years after a few cycles on FC way back in 2016, then that all crashed around me when my CLL returned in May of this year.Hope this helps, carry on taking the tablets, be as well as you can be. Most of all think positive and keep smiling if you can of course.

[theclarksark]

Thank you for your reply. How long have you been on Acalabrutnib?

[kitchengardener2]

I was prescribed Acalabrutinib in September and I feel that I am tolerating it well. My white cell count dropped within four weeks from 250 to 150 and then 44.1 and four weeks ago the count was 33. I have another appointment and bloods on 13th December so it will be interesting to see where I am. I don't think I have lost hair but it is much drier and doesn't hold my style. I would also say that my skin is much drier and I am using pots of moisturiser. Since September my anaemia levels are much better, liver and kidney function are satisfactory. I have never felt ill even before diagnosis and during watch and wait and I have no lack of energy.

[juli65]

Hi I have been on acalutrinib for 5 months now and iv also shedded lots of hair quite limp and extremely thin now

[Eucalyptus22]

The same thing has happened to me on Acalabrutinib. Hair is now like angel hair so fine and the shower is full of it when I wash it at the moment. I was doing some things to improve it which helped. I started on Biotin and my hair improved dramatically. I used Philip Kingsley hair tonic with added rosemary essential oil. I have stopped taking Biotin because I need a blood test done for antibodies. Been off it for two weeks and hair has gone straight back to being awful so now I know the Biotin works. You do have to tell your consultant or CNS that you are taking Biotin because you have to come off it one week before bloods are done.

I would say it is definitely an unrecognised side effect of Acalabrutinib

[theclarksark]

Thank you for responding. I'm taking Biotin also. I keep hoping someone will say their hair loss stopped at some point, but no one has.

[AussieNeil Administrator]

Of relevance: Does ibrutinib cause hair loss?

Ibrutinib, a Bruton Tyrosine Kinase (BTK) inhibitor, binds to the cysteine residue at the active site of Bruton's tyrosine kinase (BTK) and can change the disulfide bonds between cysteine residues. Whether this cancer mechanism may lead to the observed hair changes is not known.

drugs.com/medical-answers/i...

Given later generation BTKi drugs are more selective, you'd think that hair loss would be less likely, unless it is just a reflection of the increased health challenge your body is under during treatment. That the newer BTKi drugs are more selective, is indicated by the observation that you don't see the commonly mentioned changes in hair noted* for ibrutinib by members on other BTKi drugs.

*Most taking ibrutinib and commenting on hair changes mention their straight hair becoming wavy (or sometimes the converse), or their hair thinning or sometimes even thickening!

Neil

[Vinweesel2023]

I started acalabrutinib in March of this year and in the past month my hair is falling out at a rapid rate. Oncologist says it is due to low iron but after reading the posts here it seems more like a side effect. I used to have thick beautiful long hair and now even after I cut it my hair is dry, brittle and I have a brush full every morning. I have started taking iron and considering Biotin but will have to check with dr. first as it appears that you have to stop taking it one week before any bloodwork.

[theclarksark in reply to Vinweesel2023]

Your experience sounds just like mine. I switched to Zanubrutinib and the hair loss stopped after a few months. I've had the same good results with Zanubrutinib and it actually costs $500 less per month. Take a Hair, Skin and Nails supplement also. My hair is not as good as before, but it is no longer wilted and thin. Good Luck.

[Vinweesel2023]

I started taking acalabrutinib in March of 2023 and in September my hair started falling out in handfuls and continues. It would appear that there have been many comments on hair loss and yet my oncologist said it would not. She said no one would even know I was taking the drug. I beg to differ. I saw my homeopath two days ago and she gave me another supplement by Pure and this has 250 mg of collagen, along with 5,000 mcg of biotin. She would like to make a mint and ginger tea and apply it to my scalp, bag it and leave it on for an hour. She said I can leave it in my hair or shampoo it out. Going to the health food store today to pick up the teas. At this point I am willing to try just about anything. I have an appt. at the cancer clinic this Thursday and will be bringing this up to her. Before treatment I had waist length long hair, thick and shiny. Doc says it is thinning due to my low iron levels and so I am not taking iron as well. I will keep you posted.